Has the UK's MS Society lost the plot?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby TFau » Tue Dec 08, 2009 8:13 am

"People with MS are unlikely to benefit from treatments that dilate blood vessels."

This is what Compston said at the end of the letter. I think it's more egregious than anything else he said. Where is the convincing evidence to support it? He must have been motivated by something other than science to say something so bold.
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Postby Boreas » Tue Dec 08, 2009 9:04 am

Here's the man - and what he thinks about the "origins of ms":

http://www.youtube.com/view_play_list?p ... 1B49FCC265


sorry, wrong one, of course - but here he is, isn't he?

http://www.youtube.com/watch?v=KmWIp2EtffA
Last edited by Boreas on Tue Dec 08, 2009 4:04 pm, edited 1 time in total.
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Postby elizabwill » Tue Dec 08, 2009 9:15 am

That's Alasdair Coles not Alistair Compton in the video
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Postby acol » Tue Dec 08, 2009 11:54 am

A few minutes ago I sent this letter to the Chief Executive of the MS Society.

The Chief Executive
MS Society
MS National Centre
372 Edgware Road
London
NW2 6ND

Dear Mr Gillespie

Re CCSVI

I was surprised when Issue 88 of ‘msmatters’ made no reference to CCSVI. This subject has been in the public domain for over a year and, as you probably know, is a topic of considerable interest to a number of MS patients worldwide. While many people are well-informed about CCSVI I suspect that a larger number have little or no knowledge of the subject. Members assume that their Society would want to keep its membership appraised of new treatments, even if they conflict with the current research model. Apparently this view is incorrect.

At a rather late stage the Society has been forced to pass comment on the subject and they have done so in a superficial and dismissive manner. Their advisors, including Professor Compston, have rejected out of hand the evidence provided by Professor Zamboni’s research papers and in particular the recent report in the Journal of Vascular Surgery (Volume 50, Number 6). Many MS Sufferers have expressed surprise and dismay over the negative response by the MS Society. It is felt that an impartial observer would at least conclude that CCSVI has the potential to be of significant benefit to people with RRMS as well as giving some benefits to people with other categories of MS. At the very least people find it highly relevant that MS patients are found to have at least 2 vascular problems while controls do not!

Fortunately other countries are not taking such a short-sighted view. A large research project is already underway at the University of Buffalo and other research projects are being proposed.

The current stance of the MS Society will only increase the suspicion that certain vested interests are unfairly influencing the judgment of people who purport to represent us. The lack of real progress towards finding solutions or cures for MS result in unnecessary suffering for the real victims: the patients and their families who have their lives torn apart by the effects of the illness. Too much reliance has been placed on expensive disease modifying drugs at the expense of other more affordable treatments which stand to benefit more people than the selected few. As I write this letter a small number of patients have decided to take the matter into their own hands and pay for the treatment privately. Many of these ‘pioneers’ are already reporting improvements to their condition. They have received not a jot of help or support from the MS Society.

Time will tell who is right about this issue but please consider how people might feel if in future years it is established that CCSVI does have a part to play in MS. How will sufferers and their families feel if the evidence shows that CCSVI intervention could have reduced their disability? What will be their reaction when it is discovered that the UK MS Society was largely to blame for the delay in instigating more research and thus providing possible treatment? If that time comes please do not hide behind the excuse that you only took the advice of advisors, many of whom had known vested interests to protect.

If you doubt the concern and anger that members are expressing over the Societies stance on this issue then I suggest that you take a look at ‘ThisIsMs’ website on the following link: http://www.thisisms.com/ftopic-9118-day ... asc-0.html When you have taken stock of what is being said on this web-site and others perhaps you could consider looking at the evidence afresh and revising your position? Funding will be needed to further this research. I look forward to your reply on these issues.

------------------------------------------------------------------------------

For what its worth!
Nigel
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UK MS society letter

Postby Dovechick » Tue Dec 08, 2009 12:32 pm

Well said Nigel, I look forward to reading their reply should they deign to do so. Do you think that follow up letters from other UK members or their families would do any good? Let me know and others too if you want us to follow your very appropriate and clever letter with some little digs. :wink:
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby ozarkcanoer » Tue Dec 08, 2009 12:58 pm

Here is an exchange from Facebook I had just minutes ago re Dr Compston :

----------------------


Alessandro Rasman

In May 2009 Dr. Compston came to Ferrara, where Dr. Zamboni showed him CCSVI angiography. He knows the issues and clearly defends its interests...
41 minutes ago · Report

Jill Nolan

Alessandro... do you mean Dr Compston clearly defends HIS interests ?
33 minutes ago ·

Alessandro Rasman Yes Jill, I think so.
7 minutes ago · Report
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Postby acol » Tue Dec 08, 2009 1:13 pm

Hi Michele

Personally, I think that individual letters always carry more weight than either petitions or other forms of grouped replies. Clearly it is a matter for each individual and the amount of time they feel that they can allocate to the matter. I just feel strongly about the issue and don't want the Society to get away with taking their members so much for granted. I was also spurred on by Johnnymac's advice to 'let them know how I felt'.
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Postby wonky1 » Tue Dec 08, 2009 2:12 pm

Well done Nigel! That is a very erudite commentary on the situation.
I do wonder if the chief executive is sleeping a little less easy these days.
Well done :!:
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Letter to MS society

Postby Dovechick » Tue Dec 08, 2009 2:13 pm

Nigel, here is my contribution, not in the same vein (hee hee) as yours but I don't think I could compete with your style in any case. But any letters we write should be different or as you say they become tantamount to a petition. My letter is getting posted in the morning.

MICHÈLE FINDLAY
CLAY-WORKS

The Chief Executive
MS Society
MS National Centre
372 Edgware Road
London
NW2 6ND

8th December 2009

Dear Mr Gillespie


Re The MS Society position regarding CCSVI

I am the mother of a 30 year old woman who is on the verge of not being able to walk. Over the 10 years since her diagnosis she has not received anything but steroids and physiotherapy as treatment for her condition, no hope, no expensive medication, only one MRI and very little time with a neurologist. To be quite honest she does not feel she has missed out on anything, as there has not been any treatment remotely likely to significantly alter the progression of her disease.

But suddenly things are different, CCSVI and the Liberation procedure have given the small number of people who have undergone it a new lease of life, some hope of halting the progression of the disease and some definite immediate improvements, even if these are not, in the short term, recovery of much physical ability for those who are more severely disabled. Take it from me that my daughter would be completely satisfied with a halt to the progression and less fatigue which are both commonly reported improvements. For that she is prepared to take the risks attached to the procedure; for what in life is risk free, even those lucky enough to have been given disease modifying drugs have to run the risk of side effects including death and failure to significantly alter the course of the disease.

Please consider your position regarding the advancement of this procedure. I understand that this may lead to a complete reappraisal of the status of the society and that may well be a difficult decision to make but we are talking here about the quality of life of thousands of people and their families, a good proportion of the MS patients being in their early adulthood. There surely cannot be a valid argument to ignore such a cost effective and relatively simple treatment. There might well be an added advantage of a means of early diagnosis of MS if thorough studies back up the initial research that revealed that all people with MS who took part in the initial research and subsequent treatment had venous stenoses.

I hope that you will consider carefully this possible new strategy for treating MS, back some research into it and consequently give our MS loved ones some hope of a better future.

Yours sincerely,



Michèle Findlay


Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby acol » Tue Dec 08, 2009 2:47 pm

Hi Michele

I think that was an excellent letter. I think that its so important to write how you feel and you made many good points which I had omitted. I always struggle to keep a letter reasonably short and to the point. Ideally, no more than an A4 page but I failed on that standard because I spilled over slightly onto a 2nd page.

Last night I did read the latest research document by Zamboni. I had to read it at least twice and I'm still uncertain about several key points. When I first read the opening paragraphs in bold my heart sank a bit when I read the main conclusions in respect to both PPMS and SPMS. However, on a subsequent reading I wondered whether or not these categories of patients had shown any deterioration over the period in question. I wasn't aware that this had been the case regarding the MSFC scale (better qualified people can correct me on this matter) and at least the QOL criteria showed an improvement.

Mentally I had always told myself that I would be more than happy if CCSVI did no more than halt the progression of my illness (I am either PPMS or SPMS). And so what is Zamboni telling us? Did the PPMS/SPMS remain the same or deteriorate slightly? I know that the period of the trial was relatively short and therefore difficult to evaluate with precision.

Aside from this scientific report there would appear to be good evidence from our colleagues on this board that real improvements are possible. You mention in your letter the need for patients to have hope for the future. Aside from the obvious scientific evidence which has been brushed aside, the MS Society need to understand the damage caused to people with MS as a result of their cavalier dismissal of this project. The more people who write the more the message will be driven home!
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Postby LR1234 » Tue Dec 08, 2009 2:55 pm

Nigel, I have also been wondering about whether the SPMSers and PPMSers progressed. It says they went back to baseline so I hoping it means they are no worse off 18 months later.
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Postby frodo » Tue Dec 08, 2009 3:10 pm

TFau wrote:"People with MS are unlikely to benefit from treatments that dilate blood vessels."

This is what Compston said at the end of the letter. I think it's more egregious than anything else he said. Where is the convincing evidence to support it? He must have been motivated by something other than science to say something so bold.

In fact I think he has a point there. In MRVs that Dr. Haake posted, most of jugulars were mechanically compressed. Vascular dilatation in this condition probably will stretch everything excepted the compressed area, making things worse. Probably would be better to try with blood thinners.
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Postby Lyon » Tue Dec 08, 2009 3:12 pm

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Postby TFau » Tue Dec 08, 2009 3:19 pm

frodo wrote:
TFau wrote:"People with MS are unlikely to benefit from treatments that dilate blood vessels."

This is what Compston said at the end of the letter. I think it's more egregious than anything else he said. Where is the convincing evidence to support it? He must have been motivated by something other than science to say something so bold.

In fact I think he has a point there. In MRVs that Dr. Haake posted, most of jugulars were mechanically compressed. Vascular dilatation in this condition probably will stretch everything excepted the compressed area, making things worse. Probably would be better to try with blood thinners.


I believe Compston was referring to the liberation procedure - you can selectively dilate a vein mechanically.
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Postby acol » Fri Dec 18, 2009 7:43 am

Yesterday, I received a reply to the earlier letter which I had sent to the Chief Executive of the MS Society. The reply came from Dr Jayne Spink who is the Director of Policy & Research.

Interestingly, the letter appears to indicate a change in policy towards CCSVI. The letter begins by telling me that the next edition of their magazine is scheduled to carry news of the current research into CCSVI. Further on in the letter Dr Jayne states that 'I have read with great interest details of Dr Zamboni's findings demonstrating a relationship between MS and venous insufficiency (as published in J Neurol Neurosurg Psychiatry).' She also acknowledged the ongoing research and said - 'The most recent and ongoing studies are vitally important in order to determine whether this approach is a potential treatment for MS. If this proves to be the case, this will indeed be a major advance and one which we would all hope for.'

Now why didn't the Society say this in the first place?

I had to re-read the initial offending MS Society policy article written on 4 December in order see the huge shift in policy! http://www.mssociety.org.uk/news_events ... dvice.html

Unfortunately, her letter couldn't admit that the Society may have made an initial error of judgement in the way that it had responded to CCSVI. The letter also misquoted me and took many of my comments completely out of context in a quite outrageous manner. So much so that I felt compelled to reply in the folowing manner:

Dr Jayne M Spink
MS Society
372 Edgware Road
London NW2 6ND

Dear Dr Spink,

CCSVI

Thank you for your letter of 14 December 2009. I believe that you have misunderstood some of the points that I made in my letter of 8 December and I have certainly been misquoted and my comments taken out of context. In your letter you attribute me as saying that I ‘express dismay that the MS Society is not supporting individuals who would like to pay for the balloon dilation procedure’. If you read my letter again you will see that you have completely misrepresented.

My dismay (and that of many others) was related to the attitude and initial response of the Society to CCSVI. This response was published on your web-site at http://www.mssociety.org.uk/news_events ... dvice.html under the banner headline ‘Medical advisors "unconvinced" by Zamboni's CCSVI theory.’ Professor Compston was particularly scathing in his dismissal of CCSVI. In your article there was no suggestion of there being any value in undertaking future research on the subject. I have to say that the whole tenor of this initial report bears no relationship with your current letter when you state ‘I have read with great interest details of Dr Zamboni’s findings……. If your letter does signal a much needed change of policy then this will be warmly welcomed by members.
My misquoted comment about the lack of ‘help and support’ from the MS Society had no relationship with financial support, either explicit or implied. Surely you must understand that the MS Societies initial hostile attitude to CCSVI has made it more difficult for those patients who try to seek treatment privately? Such attitude will also have an adverse effect on trying to encourage funding for more research.
Finally, you have also unfairly quoted me as saying that the MS Society might be considered ‘largely to blame for the delay in instigating more research’. As you clearly know this comment was made in the light of the Societies published policy on 4 December. That policy statement was potentially damaging to the work of Dr Zamboni and his colleagues. If the Society had maintained this prejudicial stance then it could have resulted in the delay of further research. My comment was very carefully made in this context.
Fortunately, your letter seems to suggest a change of policy in the Societies attitude towards CCSVI, even if there is a lack of transparency in perhaps admitting earlier mistakes.

Yours sincerely,



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Obviously I hope that the MS Society has changed its approach and chosen to be more objective. If it has done so it can only be as a result of the outrage of its members, causing them to rethink their policy. It would be nice if they have learnt from their previous mistake but it is far too early to draw such conclusion from Dr Jayne's defensive letter. I wonder whether any other members of this website have received replies?
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